Sharing Patient Stories on the Hill
Written by Ellie Herman, Advocacy Coordinator
To kickoff this year’s 2023 International Symposium, the advocacy team brought 60 patients and care partners to Capitol Hill for a day of storytelling and advocacy with our lawmakers. Hill Day participants were divided into 11 teams and interacted with over 30 offices in the House of Representatives. In the meetings, patients and care partners each had 5 minutes to share their experiences relating to their own diagnosis of GBS, CIDP, MMN, or a variant, or the diagnosis of a loved one. In preparation for Hill Day, participants attended trainings and team meetings to perfect their stories. Our Hill Day volunteers left a great impact on Capitol Hill, and helped to put stories behind the conditions we advocate for.
While the major accomplishment of Hill Day was increased awareness about our rare disease community, at the end of the meetings we asked for support of HR 5818, a bill that would allow patients on Medicare Part B to receive their infusions of Intravenous Immunoglobulin (IVIG) at home. HR 5818, championed by Representatives John Garamendi and Adrian Smith, would allow CIDP and MMN to be added to an existing Medicare benefit in place for patients with Primary Immunodeficiency (PI). You can view information and updates about HR 5818 here. If you are interested in getting involved with advocacy at the Foundation, please contact Ellie.Herman@gbs-cidp.org.
Thank you to all of our passionate Hill Day participants – we could not have had such a successful day without you!